MS, Multiple Sclerosis and fly fishing - When lightning strikes - This is a story about how life doesn't always develop as you expect, and how events beyond your control can severely affect your life - and your fishing. - Global FlyFisher

This is a story about how life doesn't always develop as you expect, and how events beyond your control can severely affect your life - and your fishing.

Some years ago I was on the island Bornholm fishing with a group of close friends. We have taken these trips many times (12-15 years actually), and still do ... although the destination Bornholm has been replaced with first Fyn and now our home shores of Zealand.
Well, that's another story.

This one begins on the rocky island of Bornholm.

We scooted around as always and fished all available locations on the island, and I was one of those among us who particularly enjoyed the rough shores of Bornholm, the rocky bottom and challenging wading.
I've never had any problems with walking or wading, and in my group of friends I have been known to take quite a few chances while fishing. A trip around the "Rolling Rock Point" or a wading in the boulders of Vang or the rocks of Rø, notoriously difficult places to wade, was not something that made my fishing worse.

It was therefore with some surprise that I fell a few times while wading, and it not even on the most challenging locations. I wasn't old or weak, but in my mid-forties and in my "best age," and very unaccustomed to feeling insecure or just using a wading staff, even on the rocky island. It was very strange to fall in twice on the same trip, and have to sacrifice camera and cellphone to the gods of the sea.

Later that same season I twisted while wading and got a swollen knee and on the whole, my wading became a bit more uncertain and unstable.

During a trip to Djursland here in Denmark the year after I noticed it particularly. I was on Helgenæs, and as always I walked many miles and ended on a spectacular reef with the most phenomenal bottom conditions and a great view towards the port of Denmark's second largest city Aarhus.
On the way back I noticed an odd buzzing sensation in the shins.

It didn't get worse, but did not go away either, and after a while I went to see the doctor. He found nothing wrong apart from my complaining about the buzzing. He told me to go home, and return if it didn't go away.
I continued as usual with my life and my many fishing trips. During a good year they amounted to approximately 60-70 fishing days.
One January day, something strange happened. One of my feet was asleep and would not wake up. The numb foot felt exactly as if I had been in a position which had squeezed the nerves and caused the familiar numbness. Normally it would just go away when I got up and contact was reestablished, but this didn't disappear!

After a day I went to the doctor, and I could see from his worried look that it wasn't anything good he was thinking of. He sent me directly to the neurology department at the local hospital, and here I was hospitalized for a day and studied high and low, set to be MR scanned and submitted to several examinations. This was my first and only stay in a hospital ever... and I'm 52! So, as you can see, I was definitely not used to having health problems.
But that was about to change.

MS - Multiple Sclerosis!
To make an already too long story short, I was summoned a month later, and told that I had MS or Multiple Sclerosis.
At that time I had already prepared myself for a message like that, seeing all the grievous faces on the doctors who had examined me and considering what type of examinations they submitted me to. But even though was no big surprise, it was still one of the more dramatic moments in my life and a day I won't forget right away.

For those who don't know it, MS a disease that breaks down the nervous system and can cause everything from reduced sensation in the legs and arms to complete lack of control of the same limbs, and even blindness and brain damage. MS develops very differently from patient to patient, but many end up in wheelchairs and some even tied to a bed without the ability to move.
The cause of MS is unknown.
And for good measure MS is incurable.

Insecure wading
In the beginning there wasn't much to notice. My legs worked again, and all that was left was the same buzzing sensation. I had to go to the toilet more often, and I, who was known to be able to fish all day without having to pee, now had to get out of the water several times a day to take care of business. But then again, I wasn't the only 50-year-old, who was loosing control of my bladder, so no worries.
But I also started to wade and walk with a bit less confidence. I had to start using my homemade wading staff, and even had to buy a sturdier one that gave more support. When I was walking on rocks and uneven ground, it was with great care. I was in salmon fishing in BC, and my fellow anglers dubbed me Mr. Wobbly, which says something about my gait.
Gradually, however, it wasn't only on rock bottom and current that caused problems, but also flat sand, and after a few years, I was in such a bad shape that it was inconvenient, unsafe and nearly impossible for me to fish wading.

Time to take the ferry
My fishing was now so difficult (if not impossible) that I had to do something drastic, and the solution was a pontoon boat. The boat is a relatively small, compact, but comfortable, vessel that can be packed into a (very large) bag and fits in the boot of a car when deflated.
It allows me to use their arms instead of the legs to move around in the water. I have a small anchor and a drift anchor to control my drifting, and apart from being cumbersome to unpack and pack down, I can now move around and fish almost as before.
I fish much as I used to, and sailing does not necessarily mean going far out or fishing deep water. I like to move between my wading companions, although I also take the opportunity of getting further out than the wading anglers can.

My struggles
However, I have had my struggles, because fishing is not quite as easy as it was. One step, one cast does not work in a pontoon boat. You tend to drift where the wind and currents bring you, and even when you lie still, you rarely point in the direction you want to in relation to the wind and the water that you want to fish.

My legs are not good enough to control the boat with flippers, so I'm forced to row myself in position. Oars, anchor rope, pins, D-rings and tube butts have an impressive ability to catch a fly line, even though there's a stripping basket mounted on the boat. Just as I have decided that now it's time to cast, the loose line sticks in a place where I can't reach it.
Flies are invariably stuck in the straps, loops, boots and everything you can imagine. And always just out of reach.

Landing the fish is not as it was. I have never used a landing net, but I do now.
Just to take a picture of a fellow angler fighting a fish can be a challenge. The boat will drift to wherever it wishes, and mostly pointing in the wrong direction. It's not easy to vary your angle of view and height when sitting in a seat, fixed as you are.

Dependency
One of the most annoying aspects of the boat in combination with the disease, is that I am very dependent on others.
I know that they all say that I should not worry about it, and I have also become better at asking for help, but it's not easy to have to have someone to assist with everything. Sometimes I even have problems taking off my waders without help!
My whole life I've been used to just go, pack a rod, a roll of tippet and a fly box, and go when it suited me. Now I need someone to carry the boat, help me inflate and assemble it, help me down to the water and on board and in general help with many things, which I did not even think about before.

I get tired quickly - fatigued as it is called. It's a special kind of tiredness where you lose the ability to control muscles. The strength is there, the control is not. In my case it's the legs, which fail, and after a long drive from home, unpacking the pontoon boat, inflating it and dragging it to the water's edge, I can hardly drag myself back to the car to close and lock it. And the car is rarely parked far away, because I don't fish anywhere where there is a walk from the car to the water.

A new life
When I look at my fishing reports, I can see that I have been out to fish less than 20 days this year. That should be compared to the 90 days , which is my previous record and the 60-70 days per year that used to my norm just few years ago.

It has simply become inconvenient.

I still enjoy fishing, and once I'm there it's great, but the way to the water's edge is long and tiring.
I only fish places where you can drive right down to the water, and long walks are now superseded by shorter rowing trips. I always fish with someone, but still more in solitude because I sail while they wade.
My stream fishing and salmon fishing is over for now. I can't wade, and certainly not in running water, and I can't even walk along a river anymore. I have also become dependent on a cane, and only have one hand free. Even an uneven lawn can be a challenge to cross.

And what can we learn from that?
I say it every time I meet people who tell me about their future plans, about the adventures they are going to go on when they have saved up, the things they want to experience when they have the time and the many fishing trips they will go on when they retire.

If you are planning on doing something, do it now!
Not in a year or two, let alone ten, but now!

I am in the fortunate situation that I have trekked in the High Sierras and the Rocky Mountains fishing for cutthroat.
I've caught bonefish and tarpon in the Carribean.
I've been to Iceland and BC catching salmon.
I have traveled and fished many places in the world and made those trips while I could still stand on my feet.

If I look back over my "fishing career", there's not much that I miss. I will most likely never go to New Zealand as I had dreamed of, and when I think back on the only time I had planned a trip there, I can bite my own tongue for having canceled it because of work.
Work!
Some stupid excuse!
Never again will work prevent me from doing anything I want to... if I can that is...

Because of this, I say to people with plans for the distant future: Do it! Get going! Enjoy! Fish!

Don't use all sorts of lame excuses for postponing what you want to do, because one day, all of a sudden it might be you who is sitting opposite a doctor who gives you the message that changes your life forever.
And at that moment work, finances and family obligations are your smallest problems! Soon after you may simply not be physically able to do what you want.
Of course I hope that this never happens, but plan your life as if it's going to happen, and do nothing in the belief that you will become richer, healthier, have more time or even a greater urge or more enery to do things.

CP and MS at once! Some people have all the luck, huh?
I know you can live with these diseases. My own MS is under control and I'm doing fairly well. My wife and I have been a part time foster family for a boy with CP since he was 5 (he turns 13 next year), and he is also doing fine and almost always in a good mood in spite of being paraplegic and spastic.
Even though both he and I have our problems, we both live a good life (and a lot of fun racing in our wheelchairs). I can imagine having both diseases at once is really hard, but I hope that both she and you in her family cope and that you manage to go fishing together.

I have had great use of my small pontoon boat and kayaks, enabling me to go on the water, and I'm also able to fish from a boat, which has brought me some nice experiences.

Best wishes for the future to her and the whole family.

Martin

From: Daniel - Full name and email anonymizedLinkSubmitted November 16th 2014

Martin. You took my heart away while reading the article. I also have a handicapped daughter with MS added to quadra palsy. I know now I could do something more for her to keep her enthusiasm with fishing. Thanks for great life mentoring lesson. I also hope you constantly to find adaptation to ever changing fishing conditions.
Wish you all the best.
Daniel

Jeez, what a shock! I didn't know until I walked through the Danish fly fair article and I see something very unfamiliar…

Man it must be more than 20 years we met in a get together somewhere in Ulm (Gemrany) together with some other weirdo's (incl. Hans) trying to fish in mid winter… After tying at two Danish fly fair in the early 1990's I stopped tying at shows and also lost contact with nearly all friends & tiers.

Hold on Martin.

All the best wishes my old friend.
Jay

From: Scott - Full name and email anonymizedLinkSubmitted May 23rd 2013

Not sure if you have looked into it or could get it but you could look at a drug called Modafinil/Provigil.

I've heard it work well for other MS sufferers to deal with the fatigue at least.

I have a constant eye out for Weigall's "The River Behind the Hill: A Celebration of Australian Fly Fishing", but I haven't seen or heard about the other titles of his that you mention.

Neither have I heard of Greg French's "Frog Call", but it's now on its way to my mailbox. I found a used copy, not cheap but reasonable.

Thanks for the tips.

Martin

From: David - Full name and email anonymizedLinkSubmitted October 14th 2012

Wow. Stumbled onto your page through your review of Phil Weigall's book (btw as well as the other titles of his that you mentioned finding, there are others, too (eg "trout stories" and "call of the river")).

Your story makes me think that I need to take those opportunities to fish (and do whatever else) when they are there. Without trying to be too melancholy, it's only recently that I realised that I have gotten older than my dad did, and I'm (just) short of 50.

Speaking of Australian fly fishing books, have you read Greg French's "Frog Call"? One of the major people featured in the book does have MS, and it's discussed a little in terms of it's effect on his fishing. He calls it "the f*#kedness" It's also just a great book for other reasons, and even for those not interested in fishing...

Your words echo with me as well and are sage advice indeed. A friend once told me, after I said to him (about something I wanted to very much do), "I'll do that someday". He said, "Son, (then a long pause) there is no some day". The man was a veteran of the battle for Bastogne in WWII, who shared with me... "some things".

I had to think about what he said for a minute, before it hit me like a hammer. Some day never happens. There is today. Live it!

I've tried to follow that creed as best I can...albeit now with a renewed vigor, with my two sons!

Not quite sure how I stumbled on you page, but it was heartfelt. I often yell at fishermen who tell me SOMEDAY, You are so right in doing it now. I talked a 65 year old guy into going to Alaska last year. Met him in a parking lot steelhead fishing in Pulaski NY. Yelled at him for saying he wants to fish Alaska someday. He went had a great time and we have been friends ever since. The other line I dislike is a fishing trip of a life time. He'll if it was that good go back. I wish you luck and better health.

Great to make contact again after all these years - when you took me sea trout fishing off Copenhagen when I was in Denmark for business in December of 2000. So sorry to hear about your fishing instability - your message is well-read and taken on board!

Knowing about your MS was like a punch on my face. I know many fishermen from many places, but no one with your enthusiasm about fishing. I’m sure that passion and your optimistic thinking will let you enjoy fishing and traveling for other 50 years!

I remember you telling my wife and myself exactly that advice - "do it while you can". So it was a sad day when I heard you were unwell, and we feel for you, think of you and pray for you often. Yet I don't think even MS will hold you back too much, as your article shows. Bless you, my friend, and keep up your inspiring work on the website, as well as your inspiring determination to fish. You are more an example to follow now than you ever were. We'll keep tuning in to read your work and your play.

Martin, I very much appreciate the information you have brought in this site. I too have health issues and echo your exhortation to get out and live now. I am 58 and discovered that our warrantee runs out at 50! We need to stretch out and live while we can. You have enriched my life with your website. Reach out and live to the maximum you can! All the best to you!

From: Richard - Full name and email anonymizedLinkSubmitted October 20th 2011

I wish well sir, keep your chin up, I had a aunt with MS she lived a full life, not the easiest, she always had a smile, make each day bright and I wish you many,many,many more to come.

From: Michael - Full name and email anonymizedLinkSubmitted October 19th 2011

Martin- I have enjoyed your articles on GFF as well as your On Location Podcasts. You are absolutely right about doing what one enjoys NOW rather than LATER. Best wishes and hope you can get back out on the water soon!

Hi Martin, I am very sorry to hear you are unwell, I hope you can find a treatment that helps you.
As for NZ, come on down, the flight is a long one, but I know many lakes where a Pontoon boat is perfect for fishing. I have a pontoon boat that you can use once you get here and would be happy to show you around some of the lovely North Island lakes.
All the best.
Mike

Hi Martin, I interviewed this local fishing personality, Graeme Sinclair, who got MS in his forties, an inspiring guy and like you, is making the best of a bad situation. Hope it may benefit you in some way to see how another fisho is dealing with the problems.

I have been in the care of the best doctors here in Denmark in a hospital with a whole department treating MS-patients only, but unfortunately I form antibodies against the medcine they can offer, and as it is right now there are very few alternative options apart from some that are experimental and some with pretty high risk levels.
I'm still under regular observation and hoping that something will appear than can halt the development or even make me better.

Thanks for your kind thoughts. If you keep on coming by GFF, I'll keep on posting new material.

Martin

From: Dwight - Full name and email anonymizedLinkSubmitted October 14th 2011

Mr. Jorgensen,
As a physician, I urge you to look into the various new treatments for MS, if you have not already done so. They may not reverse the damage that you have already suffered, but they may be able to hold the disease at bay for many years.
As a fly fisherman who has enjoyed and learned from your blog for many years, I wish you all the best in this phase of your life. You will be in my thoughts and prayers.

From: Dave - Full name and email anonymizedLinkSubmitted October 14th 2011

Hi Martin,
I know it is a long way but it is not too late to get your backside on an aircraft to the South Island of New Zealand. You will find plenty of river access where you can drive to the waters edge. NZ is also the land of lakes, and there is excellent fishing in most. I know of several Guides who would be able to get you some outstanding fishing. No need to take your own gear either, just you and your camera. You would not regret it.

Martin my prayers are with you and my highest and most luminious thoughts are with you for your health!
You are an amazing ambassador for the art of fly fishing and we are all better for who you are in the world and your passion for sharing that of which you are passionate about !
To your health and many more tight lines!

What a story. These are the things that happen to others. As you state, memories are the most important thing in live. And allthough luck is a strange word in this context, you were lucky having been able to collect a lot of them. And apart from that, don't forget to enjoy the fact that you cocreated the best flyfishing site on the planet!
I recently entered a video called "Doc of Drakes" that proves that, even with a serious disease, there remain possibilities to enjoy our breathtaking sport. I sincerely hope that this awful disease allows you to keep on fishing for many many years!!

After reading your story, I was completely knocked down for a couple of minutes. Life can be so cruel, but I can read that you are mentally very strong, and I think that it is the only way to handle this terrible desease.
For a couple of years now I struggle with heart problems, and that also gives you a mental knock-down.
Also lucky for me that I had the oppertunity to travel and fish on nice places before my disease. Today I am still afraid to go far away and I don't fish alone anymore. But my disease is nothing comparing with what you are going trough at the moment. So for now I am not complaining anymore about myself ! This story is so true about that you must do what you always have wanted to do, try to do it today not tomorrow!
Dear Martin, thank you for telling us your story, all the best and be strong.

GFF will continue, and maybe even stronger than ever, because I compensate for my lack of fishing by writing even more about it and try to get as much material from outisde contributors as I can.
So GFF will provide me with "virtual fishing trips" when I don't have the energy to get out there in real life, and that will hopefully rub off on the rest of you!

Thanks for your comment!
Yes, I certainly try to keep my spirits high and do what I can in spite of getting worse physically. Sometimes it's a loosing game, but most of the time it's a question of turning things around and looking at what you can in stead of what you can't. A classical glass half full/half empty situation.

Very nice story Martin and good point! To the people reading this, I know Martin and even though he has lost a lot of his fishing, I have never seen anybody getting such a treat and still been strong mentally. Martin has always been very positive and maybe it's a cliche but being positive and focus on the good, Martin is living proof of is the best way to enjoy you time here on. Live it!
Stay strong my friend!
Nils

From: Simon - Full name and email anonymizedLinkSubmitted October 10th 2011

Thank you for this very honest article. The 'just do it' message is an important one. I suffered from a debilitating disease a few years ago, which has now improved. I remember thinking at the time "I wish I had followed my dreams"...... Life is so short and we must live it to the full. I'm now grateful for every day. I wish you all the best & many tight lines.........

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